CF Doc. gives negative survival rate for 9 yr. old,Do I get second opinion??

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote></div>

Hi Nora,
In the fall of 2000, I had a tooth go bad. I had it pulled. It was the fifth tooth I had pulled in my early to mid thirties. I told the dentist I would need antibiotics or I would end up sick. He didn't believe me and gave me nothing. So I ended up in the ER and was prescribed Keflex which I later read is contra-indicated for people with CF. (No, I can't back that up. That article seems to no longer be online.) This began 10 weeks of chronic sinus infection. Every time I came off an antibiotic, I was in the ER again within 48 hours. In January of 2001, it turned into pneumonia practically overnight. I was mostly bedridden for the next 3 1/2 months. I did manage to get out of bed to go to doctor's appointments. I was at the hospital about twice a week -- while they ran more tests, implied I needed a shrink, and generally denied me treatment. I limped along with hot baths and other home remedies, just trying to keep myself alive.

In May 2001, they finally diagnosed me with "atypical CF". I now had a serious diagnosis and they were prepared to take me a bit more seriously (though they still told me "people like you don't get well -- symptom management is the name of the game"). I went through 13 or 14 rounds of drugs that summer. Again: every time I ran out of antibiotics, I was back in the ER within 48 hours.

The end of August 2001, I came up with my own hypothesis. My condition stabilized within 2 weeks. In the seven years since then, I have learned a lot more about nutrition and alternative remedies. I have gradually gotten healthier. I have gotten off 8 or 9 prescription drugs. The hole in my left lung has closed. My lung capacity has increased. I have been off digestive enzymes for a bit over two years. I have had a full time job for the last two years -- my first ever full time paid job. I got this job just about when I was physically able to handle it for the first time in my life. And I really needed a job: I was going through a divorce and semi-homeless, living with my two teenaged sons in a single bedroom at the home of my relatives. Initiating a divorce while too sick to hold down a job is one of the scariest things I have ever done. I spent much of that time just trying to get through TODAY, with blinders on about anything beyond that, trying to avoid being completely paralyzed with fear.

I believe people with CF can be a lot healthier than most doctor's think. I believe the root cause of inflammation is mostly acidity. Treating that can prevent infection. I believe that sea salt can go a long ways towards creating healthy mucus in people with CF. I believe the mucus problem is largely why our lungs and gut are both impaired: they are both lined with mucus. I believe the battle with CF is at least as much mental and social as it is physical. And I believe the single biggest obstacle to getting well is believing the warped mental models we are constantly presented with, mental models that say things like getting is sicker and sicker "is the normal progression of CF and there is nothing you can do". Well, if you believe that and do nothing, then it's a self-fulfilling prophecy.

At this point, I have little faith in doctors. I have a lot of faith in good nutrition, lifestyle changes, and the wisdom and information I can find online through others who have faced similarly hopeless medical situations and defied what doctors predicted for them and/or their kids. I know of thousands of people defying "the odds" and doing things that fly in the face of conventional medicine.

Peace and good luck with this.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote></div>

Hi Nora,
In the fall of 2000, I had a tooth go bad. I had it pulled. It was the fifth tooth I had pulled in my early to mid thirties. I told the dentist I would need antibiotics or I would end up sick. He didn't believe me and gave me nothing. So I ended up in the ER and was prescribed Keflex which I later read is contra-indicated for people with CF. (No, I can't back that up. That article seems to no longer be online.) This began 10 weeks of chronic sinus infection. Every time I came off an antibiotic, I was in the ER again within 48 hours. In January of 2001, it turned into pneumonia practically overnight. I was mostly bedridden for the next 3 1/2 months. I did manage to get out of bed to go to doctor's appointments. I was at the hospital about twice a week -- while they ran more tests, implied I needed a shrink, and generally denied me treatment. I limped along with hot baths and other home remedies, just trying to keep myself alive.

In May 2001, they finally diagnosed me with "atypical CF". I now had a serious diagnosis and they were prepared to take me a bit more seriously (though they still told me "people like you don't get well -- symptom management is the name of the game"). I went through 13 or 14 rounds of drugs that summer. Again: every time I ran out of antibiotics, I was back in the ER within 48 hours.

The end of August 2001, I came up with my own hypothesis. My condition stabilized within 2 weeks. In the seven years since then, I have learned a lot more about nutrition and alternative remedies. I have gradually gotten healthier. I have gotten off 8 or 9 prescription drugs. The hole in my left lung has closed. My lung capacity has increased. I have been off digestive enzymes for a bit over two years. I have had a full time job for the last two years -- my first ever full time paid job. I got this job just about when I was physically able to handle it for the first time in my life. And I really needed a job: I was going through a divorce and semi-homeless, living with my two teenaged sons in a single bedroom at the home of my relatives. Initiating a divorce while too sick to hold down a job is one of the scariest things I have ever done. I spent much of that time just trying to get through TODAY, with blinders on about anything beyond that, trying to avoid being completely paralyzed with fear.

I believe people with CF can be a lot healthier than most doctor's think. I believe the root cause of inflammation is mostly acidity. Treating that can prevent infection. I believe that sea salt can go a long ways towards creating healthy mucus in people with CF. I believe the mucus problem is largely why our lungs and gut are both impaired: they are both lined with mucus. I believe the battle with CF is at least as much mental and social as it is physical. And I believe the single biggest obstacle to getting well is believing the warped mental models we are constantly presented with, mental models that say things like getting is sicker and sicker "is the normal progression of CF and there is nothing you can do". Well, if you believe that and do nothing, then it's a self-fulfilling prophecy.

At this point, I have little faith in doctors. I have a lot of faith in good nutrition, lifestyle changes, and the wisdom and information I can find online through others who have faced similarly hopeless medical situations and defied what doctors predicted for them and/or their kids. I know of thousands of people defying "the odds" and doing things that fly in the face of conventional medicine.

Peace and good luck with this.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote></div>

Hi Nora,
In the fall of 2000, I had a tooth go bad. I had it pulled. It was the fifth tooth I had pulled in my early to mid thirties. I told the dentist I would need antibiotics or I would end up sick. He didn't believe me and gave me nothing. So I ended up in the ER and was prescribed Keflex which I later read is contra-indicated for people with CF. (No, I can't back that up. That article seems to no longer be online.) This began 10 weeks of chronic sinus infection. Every time I came off an antibiotic, I was in the ER again within 48 hours. In January of 2001, it turned into pneumonia practically overnight. I was mostly bedridden for the next 3 1/2 months. I did manage to get out of bed to go to doctor's appointments. I was at the hospital about twice a week -- while they ran more tests, implied I needed a shrink, and generally denied me treatment. I limped along with hot baths and other home remedies, just trying to keep myself alive.

In May 2001, they finally diagnosed me with "atypical CF". I now had a serious diagnosis and they were prepared to take me a bit more seriously (though they still told me "people like you don't get well -- symptom management is the name of the game"). I went through 13 or 14 rounds of drugs that summer. Again: every time I ran out of antibiotics, I was back in the ER within 48 hours.

The end of August 2001, I came up with my own hypothesis. My condition stabilized within 2 weeks. In the seven years since then, I have learned a lot more about nutrition and alternative remedies. I have gradually gotten healthier. I have gotten off 8 or 9 prescription drugs. The hole in my left lung has closed. My lung capacity has increased. I have been off digestive enzymes for a bit over two years. I have had a full time job for the last two years -- my first ever full time paid job. I got this job just about when I was physically able to handle it for the first time in my life. And I really needed a job: I was going through a divorce and semi-homeless, living with my two teenaged sons in a single bedroom at the home of my relatives. Initiating a divorce while too sick to hold down a job is one of the scariest things I have ever done. I spent much of that time just trying to get through TODAY, with blinders on about anything beyond that, trying to avoid being completely paralyzed with fear.

I believe people with CF can be a lot healthier than most doctor's think. I believe the root cause of inflammation is mostly acidity. Treating that can prevent infection. I believe that sea salt can go a long ways towards creating healthy mucus in people with CF. I believe the mucus problem is largely why our lungs and gut are both impaired: they are both lined with mucus. I believe the battle with CF is at least as much mental and social as it is physical. And I believe the single biggest obstacle to getting well is believing the warped mental models we are constantly presented with, mental models that say things like getting is sicker and sicker "is the normal progression of CF and there is nothing you can do". Well, if you believe that and do nothing, then it's a self-fulfilling prophecy.

At this point, I have little faith in doctors. I have a lot of faith in good nutrition, lifestyle changes, and the wisdom and information I can find online through others who have faced similarly hopeless medical situations and defied what doctors predicted for them and/or their kids. I know of thousands of people defying "the odds" and doing things that fly in the face of conventional medicine.

Peace and good luck with this.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote>

Hi Nora,
In the fall of 2000, I had a tooth go bad. I had it pulled. It was the fifth tooth I had pulled in my early to mid thirties. I told the dentist I would need antibiotics or I would end up sick. He didn't believe me and gave me nothing. So I ended up in the ER and was prescribed Keflex which I later read is contra-indicated for people with CF. (No, I can't back that up. That article seems to no longer be online.) This began 10 weeks of chronic sinus infection. Every time I came off an antibiotic, I was in the ER again within 48 hours. In January of 2001, it turned into pneumonia practically overnight. I was mostly bedridden for the next 3 1/2 months. I did manage to get out of bed to go to doctor's appointments. I was at the hospital about twice a week -- while they ran more tests, implied I needed a shrink, and generally denied me treatment. I limped along with hot baths and other home remedies, just trying to keep myself alive.

In May 2001, they finally diagnosed me with "atypical CF". I now had a serious diagnosis and they were prepared to take me a bit more seriously (though they still told me "people like you don't get well -- symptom management is the name of the game"). I went through 13 or 14 rounds of drugs that summer. Again: every time I ran out of antibiotics, I was back in the ER within 48 hours.

The end of August 2001, I came up with my own hypothesis. My condition stabilized within 2 weeks. In the seven years since then, I have learned a lot more about nutrition and alternative remedies. I have gradually gotten healthier. I have gotten off 8 or 9 prescription drugs. The hole in my left lung has closed. My lung capacity has increased. I have been off digestive enzymes for a bit over two years. I have had a full time job for the last two years -- my first ever full time paid job. I got this job just about when I was physically able to handle it for the first time in my life. And I really needed a job: I was going through a divorce and semi-homeless, living with my two teenaged sons in a single bedroom at the home of my relatives. Initiating a divorce while too sick to hold down a job is one of the scariest things I have ever done. I spent much of that time just trying to get through TODAY, with blinders on about anything beyond that, trying to avoid being completely paralyzed with fear.

I believe people with CF can be a lot healthier than most doctor's think. I believe the root cause of inflammation is mostly acidity. Treating that can prevent infection. I believe that sea salt can go a long ways towards creating healthy mucus in people with CF. I believe the mucus problem is largely why our lungs and gut are both impaired: they are both lined with mucus. I believe the battle with CF is at least as much mental and social as it is physical. And I believe the single biggest obstacle to getting well is believing the warped mental models we are constantly presented with, mental models that say things like getting is sicker and sicker "is the normal progression of CF and there is nothing you can do". Well, if you believe that and do nothing, then it's a self-fulfilling prophecy.

At this point, I have little faith in doctors. I have a lot of faith in good nutrition, lifestyle changes, and the wisdom and information I can find online through others who have faced similarly hopeless medical situations and defied what doctors predicted for them and/or their kids. I know of thousands of people defying "the odds" and doing things that fly in the face of conventional medicine.

Peace and good luck with this.

 

[MicheleGazelle]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
<br />Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks
<br />
<br /> Nora</end quote>
<br />
<br />Hi Nora,
<br />In the fall of 2000, I had a tooth go bad. I had it pulled. It was the fifth tooth I had pulled in my early to mid thirties. I told the dentist I would need antibiotics or I would end up sick. He didn't believe me and gave me nothing. So I ended up in the ER and was prescribed Keflex which I later read is contra-indicated for people with CF. (No, I can't back that up. That article seems to no longer be online.) This began 10 weeks of chronic sinus infection. Every time I came off an antibiotic, I was in the ER again within 48 hours. In January of 2001, it turned into pneumonia practically overnight. I was mostly bedridden for the next 3 1/2 months. I did manage to get out of bed to go to doctor's appointments. I was at the hospital about twice a week -- while they ran more tests, implied I needed a shrink, and generally denied me treatment. I limped along with hot baths and other home remedies, just trying to keep myself alive.
<br />
<br />In May 2001, they finally diagnosed me with "atypical CF". I now had a serious diagnosis and they were prepared to take me a bit more seriously (though they still told me "people like you don't get well -- symptom management is the name of the game"). I went through 13 or 14 rounds of drugs that summer. Again: every time I ran out of antibiotics, I was back in the ER within 48 hours.
<br />
<br />The end of August 2001, I came up with my own hypothesis. My condition stabilized within 2 weeks. In the seven years since then, I have learned a lot more about nutrition and alternative remedies. I have gradually gotten healthier. I have gotten off 8 or 9 prescription drugs. The hole in my left lung has closed. My lung capacity has increased. I have been off digestive enzymes for a bit over two years. I have had a full time job for the last two years -- my first ever full time paid job. I got this job just about when I was physically able to handle it for the first time in my life. And I really needed a job: I was going through a divorce and semi-homeless, living with my two teenaged sons in a single bedroom at the home of my relatives. Initiating a divorce while too sick to hold down a job is one of the scariest things I have ever done. I spent much of that time just trying to get through TODAY, with blinders on about anything beyond that, trying to avoid being completely paralyzed with fear.
<br />
<br />I believe people with CF can be a lot healthier than most doctor's think. I believe the root cause of inflammation is mostly acidity. Treating that can prevent infection. I believe that sea salt can go a long ways towards creating healthy mucus in people with CF. I believe the mucus problem is largely why our lungs and gut are both impaired: they are both lined with mucus. I believe the battle with CF is at least as much mental and social as it is physical. And I believe the single biggest obstacle to getting well is believing the warped mental models we are constantly presented with, mental models that say things like getting is sicker and sicker "is the normal progression of CF and there is nothing you can do". Well, if you believe that and do nothing, then it's a self-fulfilling prophecy.
<br />
<br />At this point, I have little faith in doctors. I have a lot of faith in good nutrition, lifestyle changes, and the wisdom and information I can find online through others who have faced similarly hopeless medical situations and defied what doctors predicted for them and/or their kids. I know of thousands of people defying "the odds" and doing things that fly in the face of conventional medicine.
<br />
<br />Peace and good luck with this.

 

[Nightwriter]

Hi Nora,

I am really feeling for you. And I want to help you. I'm sure your head is spinning in the face of the doctors so-called predictions. Particularly since you are seeing some improvements in your daughter. But I always have found that the sick feeling in the pit of my stomach would lessen when I was able to take some action.

It doesn't sound like your daughter is in the middle of a crisis, so you have time to come up with a plan. I looked on-line myself and I'm assuming Vandy refers to Vanderbuilt Medical Center. I noticed that they accept Medicaid. Maybe you don't need a referral from your doctor. There were 2 numbers that you can call: Pediatric Advanced Comfort Team (Mary Jo Gilmer PHd, Rn) at 615-936-2113 or the social worker's office at 615-936-2113.

And as far as allergy controls in your home, do them slowly. Everything doesn't have to be in one day. Even if you just start with a nasal rinse (providing the doctor doesn't have an objection). Start to buy fragrance free products, clean the house when she is not home, buy her an allergy protective pillowcase, (Bed Bath and Beyond has them) just do the simple, cheap things. I'll be happy to guide you.

Everybody who has replied to this thread has seen improvements when the asthma /allergy/irritant (inflamation) part of C.F. was addressed. I think it is imperative to get great medical care by a caring, knowledgeable doctor. It is what turned the progression of my disease around. My doctor practices holistic medicine. It means looking at the whole person. Not just one body part. She believes that inflamation plays a major role in our health. And in her practice, she has seen all kinds of hopeless people with all kinds of problems start to get better, after going from doctor to doctor. Control inflamation by appropriate meds (if needed), controlling your environment, diet (eg. no sulfites, artificial ingredients, chemicals, cut out sugar, etc.) and stress, of course. Exercise is important too.

Most people feel loyal to their doctors, but when they are not helping you -- it is time to look around. You are not married to them. In any case, don't be afraid to insist on seeing an allergist or any other specialist. People who yell the loudest get heard.

I'm here if you have any questions or just want to bounce ideas off of. I know all of us on this site who have answered this thread really care and want to see Katlynn thrive.

 

[Nightwriter]

Hi Nora,

I am really feeling for you. And I want to help you. I'm sure your head is spinning in the face of the doctors so-called predictions. Particularly since you are seeing some improvements in your daughter. But I always have found that the sick feeling in the pit of my stomach would lessen when I was able to take some action.

It doesn't sound like your daughter is in the middle of a crisis, so you have time to come up with a plan. I looked on-line myself and I'm assuming Vandy refers to Vanderbuilt Medical Center. I noticed that they accept Medicaid. Maybe you don't need a referral from your doctor. There were 2 numbers that you can call: Pediatric Advanced Comfort Team (Mary Jo Gilmer PHd, Rn) at 615-936-2113 or the social worker's office at 615-936-2113.

And as far as allergy controls in your home, do them slowly. Everything doesn't have to be in one day. Even if you just start with a nasal rinse (providing the doctor doesn't have an objection). Start to buy fragrance free products, clean the house when she is not home, buy her an allergy protective pillowcase, (Bed Bath and Beyond has them) just do the simple, cheap things. I'll be happy to guide you.

Everybody who has replied to this thread has seen improvements when the asthma /allergy/irritant (inflamation) part of C.F. was addressed. I think it is imperative to get great medical care by a caring, knowledgeable doctor. It is what turned the progression of my disease around. My doctor practices holistic medicine. It means looking at the whole person. Not just one body part. She believes that inflamation plays a major role in our health. And in her practice, she has seen all kinds of hopeless people with all kinds of problems start to get better, after going from doctor to doctor. Control inflamation by appropriate meds (if needed), controlling your environment, diet (eg. no sulfites, artificial ingredients, chemicals, cut out sugar, etc.) and stress, of course. Exercise is important too.

Most people feel loyal to their doctors, but when they are not helping you -- it is time to look around. You are not married to them. In any case, don't be afraid to insist on seeing an allergist or any other specialist. People who yell the loudest get heard.

I'm here if you have any questions or just want to bounce ideas off of. I know all of us on this site who have answered this thread really care and want to see Katlynn thrive.

 

[Nightwriter]

Hi Nora,

I am really feeling for you. And I want to help you. I'm sure your head is spinning in the face of the doctors so-called predictions. Particularly since you are seeing some improvements in your daughter. But I always have found that the sick feeling in the pit of my stomach would lessen when I was able to take some action.

It doesn't sound like your daughter is in the middle of a crisis, so you have time to come up with a plan. I looked on-line myself and I'm assuming Vandy refers to Vanderbuilt Medical Center. I noticed that they accept Medicaid. Maybe you don't need a referral from your doctor. There were 2 numbers that you can call: Pediatric Advanced Comfort Team (Mary Jo Gilmer PHd, Rn) at 615-936-2113 or the social worker's office at 615-936-2113.

And as far as allergy controls in your home, do them slowly. Everything doesn't have to be in one day. Even if you just start with a nasal rinse (providing the doctor doesn't have an objection). Start to buy fragrance free products, clean the house when she is not home, buy her an allergy protective pillowcase, (Bed Bath and Beyond has them) just do the simple, cheap things. I'll be happy to guide you.

Everybody who has replied to this thread has seen improvements when the asthma /allergy/irritant (inflamation) part of C.F. was addressed. I think it is imperative to get great medical care by a caring, knowledgeable doctor. It is what turned the progression of my disease around. My doctor practices holistic medicine. It means looking at the whole person. Not just one body part. She believes that inflamation plays a major role in our health. And in her practice, she has seen all kinds of hopeless people with all kinds of problems start to get better, after going from doctor to doctor. Control inflamation by appropriate meds (if needed), controlling your environment, diet (eg. no sulfites, artificial ingredients, chemicals, cut out sugar, etc.) and stress, of course. Exercise is important too.

Most people feel loyal to their doctors, but when they are not helping you -- it is time to look around. You are not married to them. In any case, don't be afraid to insist on seeing an allergist or any other specialist. People who yell the loudest get heard.

I'm here if you have any questions or just want to bounce ideas off of. I know all of us on this site who have answered this thread really care and want to see Katlynn thrive.

 

[Nightwriter]

Hi Nora,

I am really feeling for you. And I want to help you. I'm sure your head is spinning in the face of the doctors so-called predictions. Particularly since you are seeing some improvements in your daughter. But I always have found that the sick feeling in the pit of my stomach would lessen when I was able to take some action.

It doesn't sound like your daughter is in the middle of a crisis, so you have time to come up with a plan. I looked on-line myself and I'm assuming Vandy refers to Vanderbuilt Medical Center. I noticed that they accept Medicaid. Maybe you don't need a referral from your doctor. There were 2 numbers that you can call: Pediatric Advanced Comfort Team (Mary Jo Gilmer PHd, Rn) at 615-936-2113 or the social worker's office at 615-936-2113.

And as far as allergy controls in your home, do them slowly. Everything doesn't have to be in one day. Even if you just start with a nasal rinse (providing the doctor doesn't have an objection). Start to buy fragrance free products, clean the house when she is not home, buy her an allergy protective pillowcase, (Bed Bath and Beyond has them) just do the simple, cheap things. I'll be happy to guide you.

Everybody who has replied to this thread has seen improvements when the asthma /allergy/irritant (inflamation) part of C.F. was addressed. I think it is imperative to get great medical care by a caring, knowledgeable doctor. It is what turned the progression of my disease around. My doctor practices holistic medicine. It means looking at the whole person. Not just one body part. She believes that inflamation plays a major role in our health. And in her practice, she has seen all kinds of hopeless people with all kinds of problems start to get better, after going from doctor to doctor. Control inflamation by appropriate meds (if needed), controlling your environment, diet (eg. no sulfites, artificial ingredients, chemicals, cut out sugar, etc.) and stress, of course. Exercise is important too.

Most people feel loyal to their doctors, but when they are not helping you -- it is time to look around. You are not married to them. In any case, don't be afraid to insist on seeing an allergist or any other specialist. People who yell the loudest get heard.

I'm here if you have any questions or just want to bounce ideas off of. I know all of us on this site who have answered this thread really care and want to see Katlynn thrive.

 

[Nightwriter]

Hi Nora,
<br />
<br />I am really feeling for you. And I want to help you. I'm sure your head is spinning in the face of the doctors so-called predictions. Particularly since you are seeing some improvements in your daughter. But I always have found that the sick feeling in the pit of my stomach would lessen when I was able to take some action.
<br />
<br />It doesn't sound like your daughter is in the middle of a crisis, so you have time to come up with a plan. I looked on-line myself and I'm assuming Vandy refers to Vanderbuilt Medical Center. I noticed that they accept Medicaid. Maybe you don't need a referral from your doctor. There were 2 numbers that you can call: Pediatric Advanced Comfort Team (Mary Jo Gilmer PHd, Rn) at 615-936-2113 or the social worker's office at 615-936-2113.
<br />
<br />And as far as allergy controls in your home, do them slowly. Everything doesn't have to be in one day. Even if you just start with a nasal rinse (providing the doctor doesn't have an objection). Start to buy fragrance free products, clean the house when she is not home, buy her an allergy protective pillowcase, (Bed Bath and Beyond has them) just do the simple, cheap things. I'll be happy to guide you.
<br />
<br />Everybody who has replied to this thread has seen improvements when the asthma /allergy/irritant (inflamation) part of C.F. was addressed. I think it is imperative to get great medical care by a caring, knowledgeable doctor. It is what turned the progression of my disease around. My doctor practices holistic medicine. It means looking at the whole person. Not just one body part. She believes that inflamation plays a major role in our health. And in her practice, she has seen all kinds of hopeless people with all kinds of problems start to get better, after going from doctor to doctor. Control inflamation by appropriate meds (if needed), controlling your environment, diet (eg. no sulfites, artificial ingredients, chemicals, cut out sugar, etc.) and stress, of course. Exercise is important too.
<br />
<br />Most people feel loyal to their doctors, but when they are not helping you -- it is time to look around. You are not married to them. In any case, don't be afraid to insist on seeing an allergist or any other specialist. People who yell the loudest get heard.
<br />
<br />I'm here if you have any questions or just want to bounce ideas off of. I know all of us on this site who have answered this thread really care and want to see Katlynn thrive.

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>

It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.

Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote></div>

There are so many things that you have told us that I just can't wrap my head around. You have called your child "the next energizer bunny." If she has so much energy/is very active, and has 100% O2 saturation, how can they say she only has 6 - 8 months to live? It just doesn't make sense. Even with a 40% lung function, it doesn't ring true. There are people with much less. Why would they say transplant isn't an option? Transplant teams make that decision, not Peds doctors.

If they just started the Tobi/Cipro less than a month ago, how can they say it's not going to help, and that it's the last thing they can try for your daughter? I'm not sure what to think of this situation. I simply cannot image a doctor being that ignorant.

Stacey

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>

It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.

Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote></div>

There are so many things that you have told us that I just can't wrap my head around. You have called your child "the next energizer bunny." If she has so much energy/is very active, and has 100% O2 saturation, how can they say she only has 6 - 8 months to live? It just doesn't make sense. Even with a 40% lung function, it doesn't ring true. There are people with much less. Why would they say transplant isn't an option? Transplant teams make that decision, not Peds doctors.

If they just started the Tobi/Cipro less than a month ago, how can they say it's not going to help, and that it's the last thing they can try for your daughter? I'm not sure what to think of this situation. I simply cannot image a doctor being that ignorant.

Stacey

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>

It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.

Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote></div>

There are so many things that you have told us that I just can't wrap my head around. You have called your child "the next energizer bunny." If she has so much energy/is very active, and has 100% O2 saturation, how can they say she only has 6 - 8 months to live? It just doesn't make sense. Even with a 40% lung function, it doesn't ring true. There are people with much less. Why would they say transplant isn't an option? Transplant teams make that decision, not Peds doctors.

If they just started the Tobi/Cipro less than a month ago, how can they say it's not going to help, and that it's the last thing they can try for your daughter? I'm not sure what to think of this situation. I simply cannot image a doctor being that ignorant.

Stacey

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>

It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.

Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks

Nora</end quote>

There are so many things that you have told us that I just can't wrap my head around. You have called your child "the next energizer bunny." If she has so much energy/is very active, and has 100% O2 saturation, how can they say she only has 6 - 8 months to live? It just doesn't make sense. Even with a 40% lung function, it doesn't ring true. There are people with much less. Why would they say transplant isn't an option? Transplant teams make that decision, not Peds doctors.

If they just started the Tobi/Cipro less than a month ago, how can they say it's not going to help, and that it's the last thing they can try for your daughter? I'm not sure what to think of this situation. I simply cannot image a doctor being that ignorant.

Stacey

 

[JORDYSMOM]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>katlynnsmom</b></i>
<br />
<br />It has come down to I am confused and tired of the survival rate on my child.She is very active ,outgoing...the next energizer bunny! She has only been on Tobi since the first of the month and almost a month on the hyper.They seem to be helping her cough up more stuff. She comes down with a bug she gets from school , so we take her out. She goes back for her follow up in Birmingham and has a 100% ox. level. She has not had in a long time. Only does 40 something on the lung function test. Not good enough for them.I feel they have not given her a chance on the new med's. And giving her a short survival rate. Today I was told by her ped. that he can not refer her to Vandy. Because of medicaid ..or I could pay for it myself..he could refer me to Mobile.he tells me she is on everything she can be on that is the last a cf child can take. And a transplant is not likely in her case..if it came to that.So he informs me that her reg, cf dr. in huntsville was given her a 6 to 8 month rate......I do not accept..I have had small breakdowns all day because of their predictions..don't know how to deal...if I can. Just do what I have been doing for the past 9 years. She is my life..both my kids..My oldest daugher ,Shayla, is 19. Does well without me.I feel all I can do is talk to someone higher up...just pray more.
<br />
<br />Don't want pity..just if anyone has been through the same thing and proved them wrong. Give me advice...Thanks
<br />
<br /> Nora</end quote>
<br />
<br />There are so many things that you have told us that I just can't wrap my head around. You have called your child "the next energizer bunny." If she has so much energy/is very active, and has 100% O2 saturation, how can they say she only has 6 - 8 months to live? It just doesn't make sense. Even with a 40% lung function, it doesn't ring true. There are people with much less. Why would they say transplant isn't an option? Transplant teams make that decision, not Peds doctors.
<br />
<br />If they just started the Tobi/Cipro less than a month ago, how can they say it's not going to help, and that it's the last thing they can try for your daughter? I'm not sure what to think of this situation. I simply cannot image a doctor being that ignorant.
<br />
<br />Stacey
<br />
<br />

 

[katlynnsmom]

Thanks,
I have been talking to alot of people about this situation. Because I just cannot accept their numbers.And I do mean numbers,because that is all they seem to be looking at. I live with her everyday. I see her energy she runs on, the improvement she has on her new med's, and her strength she has. I could understand their view if she were on ox. 24/7. But she only gets it at night to rest better. Even though it still runs in the 90's. I thought,even though I am not a doctor, that since she just started the hyper and Tobi , it was off to a good start. Even though her lung function test were in the 40's and 50's her high ox. levels would mean something. That something was working and we had to give it time. This is the first time in the whole 9 yrs. of infections and surgeries that I have been scared and confused because of her doctors. I know she has some lung damage from past infections.We just need to kept them from getting more infections. And I thought that was what the new med's were for.And giving me a grim outlook with less than a month on them ....does not make sense to me.
Nora

 

[katlynnsmom]

Thanks,
I have been talking to alot of people about this situation. Because I just cannot accept their numbers.And I do mean numbers,because that is all they seem to be looking at. I live with her everyday. I see her energy she runs on, the improvement she has on her new med's, and her strength she has. I could understand their view if she were on ox. 24/7. But she only gets it at night to rest better. Even though it still runs in the 90's. I thought,even though I am not a doctor, that since she just started the hyper and Tobi , it was off to a good start. Even though her lung function test were in the 40's and 50's her high ox. levels would mean something. That something was working and we had to give it time. This is the first time in the whole 9 yrs. of infections and surgeries that I have been scared and confused because of her doctors. I know she has some lung damage from past infections.We just need to kept them from getting more infections. And I thought that was what the new med's were for.And giving me a grim outlook with less than a month on them ....does not make sense to me.
Nora

 

[katlynnsmom]

Thanks,
I have been talking to alot of people about this situation. Because I just cannot accept their numbers.And I do mean numbers,because that is all they seem to be looking at. I live with her everyday. I see her energy she runs on, the improvement she has on her new med's, and her strength she has. I could understand their view if she were on ox. 24/7. But she only gets it at night to rest better. Even though it still runs in the 90's. I thought,even though I am not a doctor, that since she just started the hyper and Tobi , it was off to a good start. Even though her lung function test were in the 40's and 50's her high ox. levels would mean something. That something was working and we had to give it time. This is the first time in the whole 9 yrs. of infections and surgeries that I have been scared and confused because of her doctors. I know she has some lung damage from past infections.We just need to kept them from getting more infections. And I thought that was what the new med's were for.And giving me a grim outlook with less than a month on them ....does not make sense to me.
Nora

 

[katlynnsmom]

Thanks,
I have been talking to alot of people about this situation. Because I just cannot accept their numbers.And I do mean numbers,because that is all they seem to be looking at. I live with her everyday. I see her energy she runs on, the improvement she has on her new med's, and her strength she has. I could understand their view if she were on ox. 24/7. But she only gets it at night to rest better. Even though it still runs in the 90's. I thought,even though I am not a doctor, that since she just started the hyper and Tobi , it was off to a good start. Even though her lung function test were in the 40's and 50's her high ox. levels would mean something. That something was working and we had to give it time. This is the first time in the whole 9 yrs. of infections and surgeries that I have been scared and confused because of her doctors. I know she has some lung damage from past infections.We just need to kept them from getting more infections. And I thought that was what the new med's were for.And giving me a grim outlook with less than a month on them ....does not make sense to me.
Nora

 

[katlynnsmom]

Thanks,
<br /> I have been talking to alot of people about this situation. Because I just cannot accept their numbers.And I do mean numbers,because that is all they seem to be looking at. I live with her everyday. I see her energy she runs on, the improvement she has on her new med's, and her strength she has. I could understand their view if she were on ox. 24/7. But she only gets it at night to rest better. Even though it still runs in the 90's. I thought,even though I am not a doctor, that since she just started the hyper and Tobi , it was off to a good start. Even though her lung function test were in the 40's and 50's her high ox. levels would mean something. That something was working and we had to give it time. This is the first time in the whole 9 yrs. of infections and surgeries that I have been scared and confused because of her doctors. I know she has some lung damage from past infections.We just need to kept them from getting more infections. And I thought that was what the new med's were for.And giving me a grim outlook with less than a month on them ....does not make sense to me.
<br /> Nora